Friday, December 30, 2011

It's hard to believe that 2012 is here! Where has the time gone? All this focus on a New Year and a new start has got me wondering, 'Did I accomplish my New Year's resolution for 2011?'

My 2011 Goal: Finding My Sweet Spot

I set out this past year on a Mission 2011 to see if I could find my "sweet spot." I defined the sweet spot as a state of energy use would leave me with a little bit of energy remaining at the end of each day. That extra leftover energy would get banked and create an energy reserve.

The concept behind this goal was simple: banked energy would be used by my body to heal. Healing would allow me to expand my energy envelope, the boundary within which I operate on a daily basis: the fine line between functioning and flaring up.

So in theory, finding the sweet spot meant finding the method by which I could get "better," with "better" being defined as the ability to do more while still successfully managing the symptoms of my fibromyalgia and chronic pain disorders.

Where I Started

At the beginning of the year, I thought that examining different aspects of my chronic illness self-management might reveal areas that needed improvement. From there, I figured if I fine-tuned my coping strategies I would be closer to finding and living in my sweet spot.

So I began by reviewing topics like planning, social support, routine, meditation, exercise, mindset, special events, using forms to track symptoms and body mechanics...

The Road I Traveled

Then I hit a really rough patch: a series of stressful events beginning in March. By May I was getting buried and thrown off track with my Mission 2011 review process. I also started making plans to schedule several medical procedures (which I wrote about in my post Mission 2011: Happiness is Having a Plan.) Along the way, I came to realize that having carpal tunnel surgery on both hands and preparing for Hepatitis C treatment were not compatible with my year-long goal.

For all practical purposes, I put my Mission 2011 on hold while I focused my efforts on using all my coping strategies to maintain my status quo and avert flare-ups during the second half of 2011. Switching gears into defensive mode, I learned that I do have the ability to keep my symptoms under pretty good control in the face of difficult circumstances. Despite all the stress, I avoided a major flare-up in 2011 by pacing, planning, resting, asking for help, delegating, saying no and making sure I had fun too.

Unfortunately, there were many days when successful coping meant using all the energy at my disposal to maintain homeostasis. This is not a strategy compatible with banking energy and discovering my sweet spot!

Lessons Learned

So I learned to find my sweet spot I need a stretch of time where I get a
break from major stressors like surgery, financial problems and the big
annoyances and irritations in life. You know, a period of
relative calm in my life.

Despite the mid-year change in course, I am proud of myself for setting this goal and actively pursue it. For the topics I did review, I discovered that I was consistently implementing many of the self-help strategies I learned. I am also proud to say that I wrote 26 blog posts in support of this goal. Along the way, these are the things that I learned about setting a year-long goal:

The only way to learn and grow is to challenge yourself.

You won't know if you can accomplish a goal if you don't get started working towards it.

Every attempt to better yourself moves you closer to a new-and-improved you.

Even if you don't accomplish your goal, you will gain invaluable knowledge and insights along the way.

Reviewing your progress (or lack thereof) helps uncover feedback that you can use to be more successful next time.

Fortunately, I can see the light at the end of the tunnel here in 2012. I'd love to say that everything got resolved, but most things did and the rest is tying up a lot of loose ends during this year. The really good news is everything worked out in the end, and that's really all I can ask the Universe to do for me.

As for connecting my goal with my blog, I have to say that I really enjoying the challenge and the built-in accountability. Having a meaty weekly blog topic to write about worked for me. I still find myself thinking about posts I want to write in support of Mission 2011, so I plan to continue the review of my self-help strategies into 2012 and beyond.

I also see that by choosing to treat my Hepatitis C in 2012, things are going to continue along the path of upheaval for another whole new year. So fasten your seatbelts because 2012 is going to be a bumpy ride.

In closing, I'd like to share a random sampling of my Mission 2011 posts below courtesy of the Zemanta widget. You can find them all by clicking the Mission 2011 link here or in the right sidebar under My Blog Topics.

Thursday, December 29, 2011

I thought I was being very practical, heading out with my hubby the Friday before Christmas to run some errands. He was walking and I accompanied him on my mobility scooter. We made it an event, taking the dogs with us so they could get out of the house too and join us for some fresh air and sunshine.

Seems innocent enough, right?

Except I literally ran into problems with the roads and sidewalks being filled with more potholes and hazards than I ever encountered before. There was one decidedly panicked moment when I had no choice but drive into a rather large pothole that spanned the width of the crosswalk to get to the curb in front of me: the scooter stalled, the motor turned off and there were mere seconds left before the traffic light turned red and cars were going to start coming at me. I got out in time, but it was a jarring experience.

Again, I didn't think much of it. I mean, heading out in my scooter means navigating all sorts of road hazards, from crazy drivers who aren't paying attention to where they are going, and don't see me, to sidewalks deformed by tree roots making them impassable. I'm always glad when Robert is with me, acting as my extra pair of eyes to help spot the problems before I get into trouble.

Unfortunately, it was too much of a wild ride for my body to handle.

By the time I got home, I was feeling some serious low back pain and I admit it completely caught me by surprise. Then I foolishly compounded the problem by heading out again, this time by car, to run a few last minute errands that we weren't able to complete on the earlier trip.

I was in bad shape when I finally got back home.

Ever since the 23rd, I've been experiencing a huge amount of pain in my low back and left hip. It wasn't enough to stop me from going to my in-laws for Christmas dinner, but I needed to take my flare-up drugs, wear a compression garment and use an ice pack to do it. Even then, the pain I felt with sitting, walking, standing, bending, etc. really distracted me from truly enjoying myself.

Bah humbug!

Now I am pretty sure this is just one of my fibromyalgia flare-ups. But yesterday I started thinking that maybe I needed to get checked out because the pain is really lingering despite all my efforts to quell it. Problem is, the doctors I would want to see have decided to take the week between Christmas and New Year's off, so there is no one available that might be able to help.

That leaves going to an Urgent Care or Emergency Room, which for fibromyalgia pain is never really a good idea because the doctors there have no idea how to help me.

So here I am, squirming in pain, irritable, grumpy, distracted, more sleep-deprived than usual and barely able to write this blog post. I'm living through this flare-up and I still can't believe something as trivial as a bumpy ride on my scooter can cause so much pain. I can't believe I am so fragile that a pothole can send me into a world of hurt. I mean, how crazy is that?

Most of all, I am sad because this was going to be a new thing for me and my hubs to do every weekend, together, with our dogs: "walk" to run errands in our local neighborhood. Right now, it's looking like the "mean streets" of West Los Angeles have put the kibosh on this plan, well, unless I can get an upgraded scooter with a souped up off-road suspension.

Can you imagine what that might look like? Or how much it would cost?!?

Good grief! I Googled and found this one for only $4.985.00!

Oh well, it's too late to ask Santa for one this year. Perhaps he'll give me one next year...

In the meantime, I could use some healing thoughts sent my way. (Or maybe some better pain drugs if you can spare a few.)

Thursday, December 22, 2011

Oh, to go shopping at the mall! I don't have to tell you it's that time of year again...or what a workout it can be if you live with chronic illness.

But who knew, every once in a while, pretty pink surprises happen, when you least expect them, at the mall?

I discovered a viral holiday video yesterday and wanted to share it will you.

I really enjoyed watching this video and I hope you will also.

I also made an interesting observation and felt some real appreciation for the creative minds behind the scenes while I was viewing it. You see, I absolutely LOVED how the producers of this video included women of all shapes, sizes, ages and colors in this video. I even watched to see if the dancers included some buxom beauties and was pleasantly surprised to see them as part of the troupe too.

As a plus size woman, I have to say that this video really helped me feel good about myself AND the holidays, because going to the mall to find clothes that fit when you are ample can often be a very frustrating experience.

So when I see something in the media that celebrates women AS THEY ARE I am so grateful. Images like these go a long way to counteract the tendency to feel bad about ourselves when we don't meet the unrealistic and unattainable standard of female beauty set in the media.

So kudos to T-Mobile for serving up a pretty pink holiday surprise at the mall that helps all women feel comfortable about their bodies. I have to say this was a really special holiday gift.

By the way, the video was filmed at the Woodfield Mall in Schaumburg, Illinois. You can read more about the making of this video at the ChicagoNow website.

Friday, December 16, 2011

I cry because I am a living example of what it means to have less cancer and more birthdays: 24 more birthdays to be exact!

It's hard to believe it's been over 23 years since I heard the words, "You have leukemia." It's hard to believe it's been 18 years since I passed the 5 year mark and my cancer was considered "cured." Plus this past year I hit another milestone: I have lived more of my life as a cancer survivor than I have lived before my cancer diagnosis. Now that is pretty remarkable.

I am also crying because, right off the top of my head, I know of four wonderful people whose lives are being impacted by a cancer diagnosis today.

One is a girlfriend with lung cancer, who is benefiting from an amazing breakthrough drug called crizotinib (Xalkori). This drug is a true miracle for a small number of lung cancer patients, stopping cancer in its tracks and allowing patients to live with lung cancer as a chronic, but manageable, illness. As often as I can, I send her greeting cards filled with words of encouragement, hope and support, just like someone did for me when I was going through my cancer treatment.

The second is a brave young woman with recurrent breast cancer. We "met" through a mutual friend on Facebook and she blogs over at Starting Over: My Journey with Cancer. Not a day goes by that I don't send a silent prayer her way hoping that she gets to celebrate 23 birthdays past her cancer diagnosis like I have.

The third is a mature female friend who was also diagnosed with breast cancer. She talked to me before her surgery and I gave her my "If I can beat this, you can beat this too." pep talk. Thank goodness the surgery was successful in removed all the cancerous cells. Two years later she is doing well and still cancer-free. Being over 50, regular mammography was instrumental in catching her cancer early.

Finally, I just learned yesterday that one of my aunts is in hospice care, dying from advanced lung cancer. Her husband, my dad's brother, died a few years back from lung cancer. Their tragedy involves cigarette smoking, which causes approximately 443,000 deaths each year, 49,400 of those from exposure to secondhand smoke.

Then there are all the people I have known who have lost their battles with cancer and are no longer here with me today. I hold them with fond memories and great care in my heart, always. Among them is my mother, who died from advanced colon cancer at the age of 61 in 1999.

Watch this video to learn more about all the ways that the American Cancer Society helps to prevent cancer, fund reasearch and support patients going through treatment.

Tuesday, December 13, 2011

"All sunny skies would be too bright,
all morning hours mean too much light,
all laughing days too gay a strain;
there must be clouds, and night, and rain,
and shut-in days,
to make us see the beauty of life's tapestry!"

~Unknown

So I have a friend who is a fitness blogger. She recently wrote a post about staying in shape during the holidays, with tips to counteract the parade of food that happens this time of year. She made a really good point about switching the focus and making the holidays about people, not food. I think we can all agree with that...

So in the pursuit of making the holidays more about people, one of her suggestions was to visit a shut-in during the holidays.

When I read this, I got a little excited. I thought maybe she would be taking her own good advice and calling me to schedule a long overdue visit. Thing is, the call hasn't come and I am feeling a little disappointed.

Then it hit me: maybe she doesn't think I am a shut-in!

Now, to be honest, I don't like thinking of myself as a shut-in either, but I looked up the definition and, sure enough, I meet the criteria:

Before I move one, I want to make it clear: being a shut-in is not something I ever thought I would be. Then again, I didn't aspire to be a sick chick either. That said, if I have to be a shut-in, perhaps I should embrace being a Shut-In Princess (just with a different ending...)

I am a shut-in because of the chronic and severe symptoms of my illnesses. Without copious amounts of help, I can't really leave the house on my own. I need assistance to go to the grocery store, get to my doctor's appointments and travel anywhere outside of a five mile radius around my house. And I have learned from experience that even if I feel good enough to go out, it doesn't mean I'll have the energy to get myself back home.

Perhaps my biggest concern is my sleep disorders and how they make me sleep-deprived during the AM hours. In fact, I am as dangerous as a drunk driver when I am sleep-deprived and behind the wheel. So I choose to cancel appointments on days I don't get enough sleep.

Now maybe my friend has a narrow view of who is a shut-in. After all, the term is usually associated with older people, and I'm not old--yet! Too bad I'm not friends with Elizabeth. She is from the South, where they have a little broader view of what a shut-in is and know shut-ins have a desperate need for casseroles. (Read Casseroles, Shut-ins and Feminism for a good chuckle.)

Can I also say that there is a real lack of services available to me that could make the difference between being shut-in and living large? The main one is disabled-friendly transportation. Sure, I used to have access to County para-transit services, but they changed their eligibility criteria and cut me off (most probably due to budget shortfalls.) Then there is Robin who is the Medicare Shut In because MediCare won't pay for a power chair to help her get out of the house. Which leaves me scratching my head and asking 'How does this make any sense?!?'

So what about you? Are you a shut-in too? Plus I'd love to hear any nifty substitutes for the word shut-in you might have, because while the word shut-in is technically correct, isn't very sick chick friendly.

Friday, December 9, 2011

I think having chemotherapy 23 years ago was enough to make all my veins go into hiding.

Needless to say, it makes getting blood out of me about as easy as, well, getting blood out of a stone. That is, if you, Mr. Phlebotomist or Ms. Doctor, are looking to SEE a vein in my arm. They are there (I am breathing and talking to you, right?) but you have to FEEL for them and KNOW your anatomy to find them.

They did teach you about anatomy and feeling for veins in phlebotomy class, right?

You know things aren't right when you are giving a pep talk to the person drawing your blood: "You can do it. They are there, you just have to feel for them. You draw blood all the time, this will be a piece of cake for you. Let me show you here on my arm where they draw blood from me all the time."

I swear it took TWO anesthesiology residents and FIVE tries before they finally got an IV into my left hand/wrist area before my recent carpal tunnel surgery.

I must have been OUT OF MY MIND to let them keep poking away at me like that. What was I thinking? I should have benched the residents and made the attending doctor start the IV after two failed attempts. No wondering I discovered bruises everywhere on my left hand and wrist when I took my bandage off last last Sunday.

It's almost incentive to dabble in some of my own do-it-yourself phlebotomy training...

Not to Proud to Beg For Your Nomination

We all like to get a little recognition for the things we do well.

I talk about being a health advocate. I'm not sure how much health advocacy my chronic illnesses really allow me do, but I try to jump at every "advocate from home" opportunity presented to me, like writing blog posts here and promoting good causes via Twitter and Facebook. So when I saw a recent email from WEGOHealth asking for nominations for their Health Activists Awards, I hear myself say to myself "Wow, I'd sure would like one!"

Here is the thing: I need you to nominate me. But let me make it easy for you! I think I found the appropriate category for me:

They may fly under the radar, but this Health Activist is a star. They aren’t featured on every top 10 list on the web, or overflowing with followers, “friends,” and audience members. But they should be. They are an amazing example of what a Health Activist is. They are an expert communicator, leader, and have so many of the qualities we admire. Who do you love to read and wish could you be friends with? This is their time to shine. When someone’s this great – you want everyone to know.

Tuesday, December 6, 2011

If you're like me and you're living with chronic Hepatitis C infection, you may be sitting on the fence when it comes to moving forward with treatment.

After all, undergoing treatment is no small thing, especially if you've been diagnosed with genotype 1 of the virus.

Conventional treatment requires a commitment of no less than 48 weeks with pegylated interferon and ribavirin. Then there are the numerous side effects, ranging from mild to moderate, that for some people can be a really big problem. Factor in the cost, the disruption to daily life and the possibility of needing to take sick time away from work and other important commitments, and choosing to move forward with treatment might not seem like such a good idea.

After all, the odds are in our favor that we will die from something other than Hepatitis C if we choose to do nothing.

But with the Federal Drug Administration (FDA) approval of two new direct acting antiviral (DAA) medications this past May, Hepatitis C treatment is starting to look a whole lot different. Some of the benefits include treatment time being cut in half to a much more manageable 24 weeks. Plus doctors have new tools to tailor treatment to each individual patient. These new treatments also come with the risk that the virus could become resistant to the medicine if it is not taken properly, as well as some new medication side effects.

I finished reading her book over the weekend and I highly recommend it to people living with Hepatitis C and their caregivers. Ms. Porter's book reads like a warm and caring pep talk. Her words were exactly what I needed to hear at this moment, as I find myself anticipating the start of my own Hepatitis C treatment at the beginning of 2012. She helped me put into perspective my choice to move forward and allowed me to let go of my fears and anxieties about making it through treatment.

In addition to providing basic information about Hepatitis C infection and an overview of the new treatment regiment that now includes DAAs, the main focus of the book is solid advice about how to successfully approach treatment. It covers topics like managing physical and psychological side effects, following your drug protocol and talking to your medical provider about treatment. It also provides strategies for managing your work life, personal life and finding the support you need to bolster you through treatment. There is even an entire chapter devoted to what to do when your Hepatitis C treatment is over, information I hadn't encountered before but I am so grateful to have now.

As a nurse who has helped patients get through treatment, as well as being a person who lives with Hepatitis C herself and has gone through treatment, Ms. Porter's book is filled with encouraging stories and helpful insights that make this more than just a health reference book. She helps the reader see Hepatitis C treatment as a journey that can help heal body, mind and spirit. She truly believes that the experience has numerous benefits besides just obtaining a SVR, a.k.a. a cure. After reading her book, I agree.

This book will be my companion through my own Hepatitis C treatment. With so much good advice, I can see myself referring back to this book time and again to answer specific questions, review coping strategies and gently remind myself of why making the choice to treat my Hepatitis C is both important and worthwhile.

The experience of reading this book also helped me get back in touch with my appreciation for nurses. During my cancer treatment, it was the nurses that took care of me when I was in the hospital that really helped me get through my treatments. I have found that same kind of support fills the pages of Ms. Porter's book.

Monday, December 5, 2011

I have been listening to Christmas songs on Pandora radio lately to get myself into the holiday mood. One song I keep hearing over and over is "My Grown-Up Christmas Wish." That song got me thinking about what I really need this holiday season.

With my plan for the New Year in my sights, my grown-up Christmas wish this year is for courage and determination.

You see, I am embarking on a tough journey in 2012: treating my chronic Hepatitis C infection. To do this, I am going to need all the physical, mental and spiritual fortitude I can muster. I'll need lots of support too.

Treatment will be 24 weeks of weekly interferon injections and multiple daily doses of anti-viral pills--ribaviran twice a day and a direct acting antiviral (DAA) three times a day. There are lots of potential side effects, from flu-like symptoms, fevers and chills, to nausea, fatigue, rash, irritability and even depression. I already know that some of these side effects will make the symptoms of some of my pre-existing chronic illness worse and that worries me. Plus treatment might be extended beyond 24 weeks depending the results of blood work taken at week twelve.

Then, once I am done, I'll need six months to recover, time I'll also spend waiting to see if the treatment was successful.

I tried doing treatment back in 2007, and three weeks in, I experienced so many side effects that I stopped. Looking back on that horrible experience, I realized that I failed because I didn't have the support of a medical team that was actively addressing my side effects. Since then, I've gone to great lengths to put together a team that I thank can help me get through Hep C treatment successfully.

Thankfully I also discovered a new book written by Lucinda Porter, RN called Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C. I read it over the weekend and plan to review it for you in-depth tomorrow. Let me say that her book put my choice to treat my Hep C into a perspective that helps me let go of my fears and anxieties about treatment.

As someone who is managing multiple chronic illnesses, I feel compelled to try and treat the one health condition that could possibly be cured: my chronic Hep C infection. It's not going to be an easy fight, but I think it is my best shot to prevent some pretty scary complications down the road. Plus I really hope that decreasing my chronic illness burden will have positive benefits in the long run.

I really need to do this. The longer I wait, the harder it will be to get the outcome that I desire. So really, I have nothing to lose trying treatment again...and everything to gain if I am successful.

So what about you? What are you wishing for this holiday season? Do you have a grown-up Christmas wish you'd like to share with me?

Before I can talk about my motivation for writing and the benefits that I have received from it, I need to talk about the actual physical act of writing, because chronic illness doesn't make getting words onto paper or a computer screen easy for me.

I am plagued with constant pain that travels from my neck down my arms and into my hands. When I use my hands too much, the pain travels from my hands up my arms to my neck. It's quite a vicious circular cycle. This constant pain prevents me from using a pen and writing on paper for more than a few lines. It also prevents me from typing on a keyboard for more than the few minutes. Since this is the traditional way that writers practice their craft, the first hurdle to overcome in my pursuit of writing has been finding alternative ways to write.

Using a speech-to-text program, specifically the computer program Dragon NaturallySpeaking, has been the solution for me.

That said, there is something almost unnatural about speaking out loud to write. For starters, I am embarrassed to do it in front of other people and worry about being overheard while I am in the process of "writing." After all, in my mind, writing is about being quiet, not talking.

I've also had a really hard time disconnecting the use of my hands from writing. In the past, writing flowed from my brain out into my fingers; the greatest challenge was getting the words typed quickly enough as they spilled out of my thoughts. Now my writing comes out of my mouth and there is a censorship that happens along this route: a process we all engage in when we have a conversation with another person. It's been challenging to just let the words flow out of my mouth when I am "writing."

Of course there's also the issue of technology interfering with the writing process. Speech-to-text programs need to be trained, and even then they can't always figure out what you're saying. Occasionally, they go rogue and start typing sentences that makes absolutely no sense what-so-ever. On occasion, I've had to postpone my writing and turn my computer off because I couldn't get the technology to cooperate.

Shedding Loneliness

I admit I wasn't much of a writer before I became chronically ill. I mean, sure, I wrote a lot of reports and grant proposals as part of my job as a social work administrator. And I occasionally attempted to keep a personal journal. But the truth of the matter is I never really had the time to devote to writing in any meaningful way because I was so busy with so many other things. Which was really quite too bad, since I always had the inkling somewhere in the back of my mind that I would really like to try taking a stab at writing a book.

So how ironic is it that one of the true gifts that chronic illnesses has given me is copious amounts of time which I can apply to the pursuit of writing?

Granted, it took some time to figure out how I could physically write after I became chronically ill. Then once I got that down, the Universe nudged me in the direction of blogging through my friend Cyndi. Like me, she experienced that inkling to write but could never find the time between work and all the other things competing for her time. After a shared conversation about the topic, she suggested that a friendly competition might get us both started writing in earnest.

Hence was born the "Blog a Day in the Month of May" challenge in May of 2009. And the rest, as they say, is history.

Over to the past two years, as I have consistently written and posted to my blog, I have succeeded in connecting with many other people living with chronic illness like me. The act of writing and then sharing my writing with the world has truly helped me shed some of my loneliness. In fact, writing my blog posts has become the focal point of my day during the "work" week. It has become so important to me that if I miss a day due to my illness or events beyond my control, I feel a little sad, lost and ungrounded.

I've enjoyed writing so much that I actually started writing a second blog called The Seated Gardener where I share my passion for container gardening, another gift given to me by chronic illness. Not to mention all the blog carnivals I participate in, other sites I guest post at and the social media places I participate in related to my blogging efforts.

Beyond Chronic Illness

All writers have to start somewhere and often the easiest place to start is writing about yourself. Surprisingly, living with chronic illness gives me a lot of writing material. Now that I have an established writing routine, I rarely find myself at a loss for a topic to write about as my ongoing adventure in learning how to live my best life despite chronic illness somehow always presents me with new challenges, discoveries and situations that lend themselves to blogging.

But I am finding that the more I write, the more I find myself drawn to trying out other genres of writing too.

One of the writing challenges I have yet to accomplish is NaNoWriMo: National Novel Writing Month. NaNoWriMo challenges participants to write 50,000 words during the month of November and bills itself as a novel starting exercise that can help you write your first book. The official NaNoWriMo event, filled with pep talks, support groups, online forums and badges, takes place every November, although anyone can choose to complete the challenge any month during the year.

I attempted NaNoWriMo in 2009 but was hampered by my physical limitations to writing and my uncooperative technology. I'm not sure why I didn't attempted it in 2010. I chose not to try it this year since I was in the midst of getting carpal tunnel surgery done on both of my hands--one at a time of course.

What I do know is that since the seed of NaNoWriMo was planted in my brain in 2009, the Universe has deposited within me four intriguing science fiction story ideas that I feel compelled to explore and develop. What these ideas will turn into, I'm not quite sure. But perhaps it is time for me to start living my life vicariously through characters of my creation! Then I could ditch the chronically ill body that is holding me back from experiencing real-life and explore a realm where chronic illness can't hold me back. (Well, at least not as much as it does in reality!)

So now that I have the interest and motivation, maybe it's time to figure out how to remove these new roadblocks to writing longer pieces of work. Perhaps the key to completing this challenge successfully is modifying it so it is more doable for me, which might mean writing 50,000 words in 60 to 90 days instead of 30. Whatever it is, I'm going to figure it out and of course share it with you here on my blog.